So I took my last steroids November 2021 and felt so much better off them. I really saw my energy and ability to exercise increasing. I think I may have ended up doing a bit too much on my holidays at the beginning of June, with heavy rucsacks and extremely tough terrain. Since then I've had bit of a scratchy feel in my hips - not stiff, more like itchy - but it wasn't getting worse and came and went. Then I got Covid 2.5 weeks ago. The illness itself was very uneventful, one night feeling lousy, fatigue that improved quickly and a slight cough. However, the last couple of nights I have woken feeling a bit odd and initially my hips have had an even more scratchy feel and one shoulder was a bit achy. It feels like PMR is lurking at the door ready to strike, but nothing like the stiffness and inability to turn over in bed or the debilitating shoulder aches when PMR first arrived. People often talk about getting on top of flares before they become full blown but I'm not sure what level of PMR type symptoms they are talking about. Am I over analysing it? Have others had experience either of doing too much exercise or getting Covid and getting that scratchy feeling? And does it just go away on its own? As an added factor I should really be considering getting Rabies, Tick Bourne Encephalitis and Hepatitis A jabs a.s.a.p. for a trip in September. Jumping in with steroids wont be particularly helpful for developing immunity from the vaccines, although if I kept the dose low that probably wouldn't be too big a deal. Really hoping the vaccines wont be the final straw. Maybe they'll just do a reset job instead!
What sort of symptoms do people mean when they ta... - PMRGCAuk
What sort of symptoms do people mean when they talk about getting on top of possible flares quickly?
Your reaction to all the strenuous activity sounds pretty logical. You may get away with it if you have a proper rest.Flares for me begin with a mild gathering of my early symptoms, in all the usual places. ie shoulders and groin and it becomes clear that they are worsening over the subsequent days. Upping my Pred by 1 mg perhaps, can head it off. I can understand your reluctance to do this though. I have heard that it takes about a year for your body to normalise after finishing with Pred. I would be inclined to take it a little more gently for a while. I am not sure what you mean by the itchy, scratchy feeling. You don’t think that you could have been bitten by a tick for instance? Lime disease is very like PMR…..I hope this passes for you. Instinctively I would delay the jabs, your immune system has had a lot of assaults.
Are these symptoms similar to your original PMR? I know people often say their second go round is different, but I suspect that refers more to the way they relate to pred and recovery than to the initial symptoms. I tend to disagree with Sheffieldjane re the immunizations, however. If they are necessary for your safety when you travel you should probably see about having them soon, preferably not all at once! Better check with a doctor though, how best to handle that because some immunizations need to be taken in isolation from others.
I don't think you should take prednisone again without medical advice and proper testing. It's not like you stopped a couple of months ago, it's been eight or nine months since your last dose. And it's possible that if you are actually sickening with something else taking pred could make things worse, or even muddy ability to make a correct diagnosis.
In any even I hope you feel better soon. Take care.
I had been off pred for 7 months when I caight Covid. I had several days of a very bad sore throat and by the end of a week I was almost back to normal. A short time later I developed a stiff neck, and then bilateral shoulder pain. In my first PMR iteration I had very little pain,, more stiffness. As a precaution I dug out some leftover pred, and started back on 2mg to see what would happen. The sore neck and the shoulder pain disappeared. A subsequent visit to my excellent GP confirmed my suspicion so I'm sitting at 2mg for the foreseeable future.Apart from the period with Covid, it hasn't interfered with my very active exercise regime of gym, squash and pilates .
Thank you all so much for taking the time to reply. All the thoughts go into the meltignpot for coming up with a decision. My symptoms aren't like the real PMR before I got treatment. That was debilitating stiffness and aching at night that woke you nd kept you awake. They are just strange pricklings in the usual PMR places that I didn't have when I came off the pred. In fact sometimes I had similar sensations when on steroids but they never came up as anything in blood tests. For the jabs I am going to a very good travel clinic, in a werk or so, that has a doctor who specialises in the type of travel I am doing so am hoping he will help with that decision. I'd rather not tie his hands by arriving with a body full of pred. I feel a little reassured by very low pred doses talked about. Very interesting squashie that you were recently off your steroids and got pain after Covid that responded to steroids and that it was a different pain. Also reassuring that it hasn't slowed you down!
Bear in mind that 3 weeks post Covid is still VERY early days and it could just be the viral infection effect.
Really it is PMR symptoms that reappear and then increase over time that you need to worry about - you are likely to have aches and pains after stopping pred for some time - and did you take pred during the Covid illness? Your adrenal function is still likely to be unreliable - and I'm not sure how Sick Day Rules apply at this early stage after stopping daily pred.
Where are you going on holiday? Both rabies and TBE are endemic where I live - but I don't indulge in any risky hobbies so I have never had the jabs. The TBE jab needs 2 shots 1-3 months apart so you need to get a wriggle on!
Hi PMRpro, interesting and reassuring reply about likelihood of getting some aches and pains after stopping pred, as I've been having some of these since stopping pred on 1st May. Result was I have had my bloods checked twice, in May ESR was 23 and CRP was 2, last week when tested again, ESR was 18 (thought it may have been higher but thankfully not!) and CRP up to 5, but doctor hasn't felt the need to ring so I'm assuming he's happy with that result. I also had Covid end of June, which has maybe added to the mix! I do find if I take Anadin Extra in the morning it gets me through the day and I can do most things, occasionally also at night to help me have a good night's sleep, but I'm seeing the rheumatologist nurse again in September for more bloods so we'll see what those show. By the way, hubby and I are going to Sicily in 11 days....Will wave on the way past 😂
ESR can be raised by many things—not just PMR/GCA - including Covid.
Mine went a bit bananas after 2 joint replacements within 6 months and a 48hr virus some 2years after GCA in remission.
Sent the GP surgery into tailspin nevertheless -and I only requested it out of interest really (pre Covid of course when you could!)
Enjoy holiday🌸
Thanks DL 🤗
Did your Covid make you chesty? Anything lung-related can send CRP up as can anything muscle-related - like the surgen grubbing about in the thing muscles when doing a hip replacement!
I'd come with you like a shot!!! Enjoy and have some gelato for me!
Thanks PMRpro. Yes, I was very catarrhal for almost 2 weeks, that may explain it then. I wouldn't have known that, you are a wealth of information , thank you! What's relato???
Gelato - must remember to read my replies more carefully!!!! Some of their icecreams are amazing!!!
Ha ha! Now it makes sense 😂 and I love ice cream!! Probably my downfall. No doubt my cholesterol level will be high when I get back!! But think I'm allowed it on holiday 😋
Gelato (the proper stuff) is made without as much cream - much lower in fat, And lots of fruit flavours have no dairy in them at all.
Ooh...keep talking....I'll definitely be looking out for those...😋😅
Apparently it was a big thing at the Rimini Gelato Event - vegans and lactose intolerant also want gelato!
Must be good!! Yum!!
You do realise I'm going to be dreaming about this now, ha ha!!
You may well be right re early days. I didn't take pred during Covid. It really was pretty asymptomatic apart from one rough night, the rapidly improving fatigue and a bit of a dry cough. My husband had the fatigue, and was probably worse overall than me, but I guess mine could have been compounded by slow adrenal function. Holiday is Albania. I think the further east you go in Europe the more of a problem TBE is. I am actually thinking that on balance I may not take it and just check obsessively for ticks instead. It does also give as one of the rare side effects 'auto-immune diseases' so that is another factor for someone like me with a suspect immune system on so many fronts at the moment. You are right I am tight for time but the Travel Clinic seemed happy. I'm hoping to leave it as long past Covid as I possibly can.
Note my diagnosis is Stills Disease which for me manifests as RA. I recognise your description of itchy and scratchy and have this in both hips usually prior to increased pain as a result of activity. Hoovering and making the beds for example, any thing that involves bending over from the hips. I have no cure for you but it does ease if I sit really still and if that fails a walk takes my mind off it as the pain from walking is worse due to RA in feet but exercise is recommended for RA.
Interesting your experience of itchy and scratchy, although I don't recognise any other symptoms that point RA or Stills Disease.
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